On October 26, 2002 Azaria Sage Lucille Baker was born. (Azaria is pronounced ah-z-AIR-ee-ah, sounds like the word "area".) She weighed 8lbs 12oz, and was 20 inches long. Azaria came into the world to meet her parents TJ and Debi, and big brother Christopher (14). Debi had a normal pregnancy, until she was about 7 months pregnant when she noticed the baby would “shake” in her belly every so often. We were told not to worry, the baby probably had an immature nervous system. Looking back, we know the baby was having seizures. Two months later, Azaria was born and it was the best day of our lives! The next day, our world would turn upside down.
On October 26, 2002 Azaria Sage Lucille Baker was born. (Azaria is pronounced ah-z-AIR-ee-ah, sounds like the word "area".) She weighed 8lbs 12oz, and was 20 inches long. Azaria came into the world to meet her parents TJ and Debi, and big brother Christopher (14). Debi had a normal pregnancy, until she was about 7 months pregnant when she noticed the baby would “shake” in her belly every so often. We were told not to worry, the baby probably had an immature nervous system. Looking back, we know the baby was having seizures. Two months later, Azaria was born and it was the best day of our lives! The next day, our world would turn upside down.
When Azaria was born, we noticed that she would quiver, but we were told that she was probably just cold, not to worry. The next day we were ready to take our newborn home. The doctor came in to discharge us and while examining Azaria, she had a seizure right in front of the doctor! Azaria was transported to Valley Children’s Hospital NICU. She was given Phenobarbital and had a lot of tests done. A CT Scan showed Agenesis of the Corpus Collosum. We were told this meant she is missing the part of the brain that connects the left and right. We couldn’t believe this was happening to us.
A neurologist suggested an eye exam by a Pediatric Ophthalmologist. We were told Aicardi Syndrome was a possibility, but is very rare and they wanted to rule it out. Before Azaria’s eye appointment we were able to go home and look up Aicardi Syndrome on the internet. After doing some research we couldn’t believe that our baby would be diagnosed with it. The agenesis of the corpus collosum we could handle, but the Aicardi Syndrome, no way! However, on November 5, 2002, at ten days old Azaria was diagnosed with Aicardi Syndrome. It felt like being kicked in the stomach. We were sent home with our baby and a referral to a genetic doctor. On November 12 we saw the genetic doctor and everything was confirmed. We were told that the prognosis was grim. The doctor said Azaria would probably never walk, talk, or live past a few years. We were told to take our baby home and enjoy the time we have with her. We cried and cried.
After being home with our baby, all we could do was hope for the best and take it one day at a time. We continued with the Phenobarb and Azaria was doing fine. At 2 months old we noticed she started having these continuous repetitive jerks. Fortunately we had been in contact with other Aicardi parents through an email group and were able to ask them what they thought this was. The response was infantile spasms. We took Azaria to see her pediatric neurologist and sure enough, he diagnosed her with infantile spasms. We were told infantile spasms are a form of seizure and almost impossible to control. At this time Azaria was having 25-50 infantile spasms a day, lasting anywhere from 10-45 minutes each.
Azaria’s neurologist suggested ACTH injections to control the spasms. We had done research, talked with other parents, and then decided we were not comfortable going that route. It was a hard decision to make but we felt the side effects of ACTH outweighed the benefits, especially since ultimately the seizures would probably return. So instead he put her on Topamax, and we increased her Phenobarb. After a month of that and an increase in seizures we were back to see the neuro. By this time she was having 60-80 seizures a day. We asked if we could try Vigabatrin to help control the infantile spasms since the Topamax was not working. Vigabatrin is not federally approved in the US so we had to purchase it from Canada. Azaria started Vigabatrin in January and it worked wonderfully for the first 2-3 weeks. The infantile spasms came back but not with the intensity that they had been. Azaria was having 20-30 a day, lasting 5-30 minutes each.
When Azaria was 4 months old she started having a new kind of seizure that made the infantile spasms look like a piece of cake. She was admitted to the hospital twice for severe seizures, convulsions, or grand mals. We added another drug Zonegran in hopes to control ALL the seizures she was having. We saw a Pediatric Neurologist at UCLA and she suggested also adding Vitamin B6. We started her on B6, and about the same time Debi removed all dairy products from her diet since she wad breastfeeding Azaria and it was felt the dairy products may be causing some of the seizures. After all of these changes Azaria’s seizures went down and seemed to be in control, only having one or two a day!
Azaria continued to do well. She was weaned off Phenobarbital and Vigabatrin, and stayed on Vitamin B6 and Zonegran. The seizures came back, on and off. She would do great for a few weeks, and then the next week she would need emergency seizure control for status seizures. It was a roller coaster! We tried to figure out why she would do well one week, and then have severe seizures the next. In July we took Azaria to see Dr. David Simon, a Professor of Neurology at Deepak Chopra’s Center for Integrated Medicine in Carlsbad, CA. Dr. Simon gave us a more holistic approach with some wonderful suggestions on how to try and control the seizures. He suggested daily massage, herbal supplements and other lifestyle changes. At the end of our visit, his assistant came in and whispered a mantra in Azaria’s ear. I don’t know what was said but after we left there, Azaria was the best she had ever been!!
Azaria lost her smile when was 2 months old, when the infantile spasms started. When she was 8 months old she started smiling again! It was so depressing not being able to see our baby smile. We are so excited now and appreciate every smile she gives us. Now Azaria is 11 months old and is still only on Vitamin B6 and Zonegran. She still has days were her seizures are out of control, but most days she only has one or two mild seizures, lasting no longer than 5 minutes. Azaria is developmentally delayed for an 11 month old. She can not sit up on her own and she has no interest in toys. She can not grasp any objects, anything put in her hand she will drop. Azaria does not put weight on her legs, roll over or crawl. In August Azaria really progressed with her head control and now has about 90% control! She also learned to do raspberries, and blow kisses. Her progress has been so amazing.
Azaria is legally blind, however she can see us coming from across a room, so we know she is able to see. On September 16th Azaria saw her pediatric ophthalmologist. We were told that the vision in her right eye is very bad. The lesions have taken over most of her vision in that eye. The vision in her left eye is great though. We were given a prescription for glasses so Azaria will soon have cute little baby glasses! Lately, teething has been our big issue. (I have to admit it has been nice dealing with an issue that all parents have to deal with.) Azaria has gotten her two bottom teeth and is now getting her top teeth. She has been very fussy and cranky, she has also had a few more seizures brought on by the teething.
Azaria has regular physical therapy and occupational therapy at UCP, and also at Cypress Rehab. She regularly sees a pediatrician, a pediatric neurologist at Children’s Hospital and UCLA, an endocrinologist at Stanford, a pediatric ophthalmologist, and a pediatric orthopedic doctor. She has a wonderful Vision Specialist who comes to our home for vision therapy. As well as a great physical therapist and a nurse who both come to our home regularly. She also gets Cranial Sacral Therapy, Aqua Therapy, Music Therapy (Kindermusik), and sees a Traditional Chinese Medical Doctor and a Nutritionist. We work with Azaria everyday and we hope one day she will be seizure free, and learn to walk and talk. We would settle for her just smiling everyday and being happy though. Azaria has so many people who love and pray for her. We are all truly blessed having this little angel in our lives! Please feel free to email us using the link below, we love sharing our story. And we are so thankful to have such a wonderful support group with the other Aicardi parents.
For more about Azaria please visit:
October 25, 2003
Today we celebrated Azaria's first birthday (her actual birthday is tomorrow). I would like to invite all of you to wish her a Happy Birthday by signing the guestbook at her website, www.AzariaSage.org. I print all of the entries and save them in a memory book so please stop by and wish her a Happy First Birthday. Azaria had a wonderful party today. She was surrounded by many family and friends who love her dearly. We had a magic show that she didn't understand but gave the two guys her full attention anyway. We placed a small birthday cake on her Kid Kart tray and sang Happy Birthday to her. After I blew out the candle I stuck her hands in the cake and gave her a taste of it. She did make a mess of it and seemed to enjoy getting her hands deep inside the cake. I couldn't help remember how my son Christopher on his first birthday was able to stand, almost walk, grab at the cake, eat his cake, drink from a cup and do so many more things. For a moment I was saddened but then I looked at Azaria and saw that she was so content. She gave me a small crinkle of the nose and a half smile with cake all over her face and hands, and I was happy once again. I have learned to not focus on the things she can't do and only think of what she will do. But it has taken a year for me to learn this and some days it is harder than others. This past year has been such a difficult one. Since she was diagnosed right after she was born I have felt like we have been swept up in a tornado this whole time. As many of you know we were told she may not see her first birthday. The more she proves the doctors wrong, the stronger we get and it becomes easier to breathe. The past year has gone by so fast with so many doctor appointments, therapies, hospitalizations, they all seem a blur. I can't help but feel cheated that a year has gone by so fast and we were too busy to actually enjoy it. Time flies even when you're not having fun. Today we reflected on the past year, looking at pictures of the day Azaria was born. I saw how happy we were not knowing what was to come the very next day. I cried because we looked so happy and innocent. Now today we took more pictures and I had to remember that although I don't know what is to come, I have to live in the moment and enjoy today.
Azaria has been doing very well. I have been really working with her feedings. She is still having a lot of difficulty learning to eat from a spoon. This past week I was determined to make some progress in this area and we did. I stopped all other therapies and only concentrated on feedings. After several days of trying she finally started getting it. She still needs some work but with a lot of patience and jars of baby food she will get there. Azaria recently visited with her orthopedic doctor where we received good news. He said her spine looks great with only a very slight curve. No major changes since January. He also took a look at her hips and said they are doing great as well. I asked him if I should be concerned that she is not weight bearing and he said not to worry at this point, that since she is a little behind developmentally that she would catch up in her own time and there is no sense pushing it. He felt she should continue her aqua therapy and follow up again soon. Sounds good to us! I was so hoping that he wouldn't give us bad news. I was afraid he might want to brace her right leg since it is starting to turn out. She likes to keep her legs frog-legged and so her foot and leg are starting to turn out. He said just to keep the massages up, try to keep her legs as straight as possible and to put high top sneakers on her. As for Azaria's seizures, she is still doing well. It's strange, she has 4 to 5 great days with minimal activity-1 or 2 seizures, then BOOM, she has one day that is so terrible and she has the real hard seizures and we have to give her a Diastat (rectal emergency seizure control). We don't know what sets it off or why it happens. I just know I don't want to add or increase any meds at this point. Azaria is only on one medication, Zonegran and also takes Vitamin B6. She has done very well with this and I have to believe these days of hard seizures are just growth spurts or development changes and will pass. I just feel so blessed (knocking on wood) that Azaria hasn't been sick at all this past year other than minor constipation. She hasn't had a cold, flu, stomach bug, ear infection, or even a runny nose. She has been very healthy in that respect and we feel very lucky.
The Spaghetti Dinner and Raffle fundraiser we had was on October 10th. It was such a success! We could not have predicted that it would go so well. The local news stations, ABC and NBC came over to our house and interviewed Azaria. They were so taken by her. They ran the story on the 5 and 6 o'clock news, and then again in the morning. They covered the fundraiser, our family and Aicardi Syndrome. One reporter kept having so much trouble saying Azaria, I kept telling her it sounds like the word "area" but she must have gotten Aicardi and Azaria mixed up somehow. Plus she said TJ was PJ! We were very thankful that they took the time to come to our home and to the fundraiser. The fundraiser sold out and we were over capacity. Many people came without reservations and we added tables to accommodate them. The place was decorated so nicely with a fall theme, lots of candles and pumpkins. We had waiters who volunteered to serve the dinner, starting off with a beautiful tossed salad. The entertainment was perfect. We had a lovely couple sing ballads as people came in, then a solo guitarist entertained during dinner, and finally during dessert a young musician sang and played guitar. It was an amazing evening! We ran out of spaghetti at one point but the cooks were able to quickly make another batch before anyone noticed. We were so lucky to have just about everything donated and so our expenses were very low. Our community was so wonderful in helping us raise over $6,000 for Azaria's medical expenses. So many people who we didn't even know came and most importantly they gave us their love and prayers. We have many people on board already wanting to help us with the next fundraiser which will benefit the Aicardi Syndrome Groups and again also help with Azaria's expenses. We truly feel blessed for all the love and support we have received on Azaria's behalf!
Azaria recently got a much needed new car seat. We are so thrilled to have her out of the infant carrier that gave her little support. Those long trips to UCLA and Stanford have really taken a toll on her little body as she sat in that uncomfortable carrier for hours. We got her the Cosco Alpha and Omega at Target. This has to be one of the best things we could have done for her! She now sits proudly like a big girl, you can just see the pride in her face as she sits tall! She loves it. Even though she is only 17 pounds, I do have her facing forward. This car seat has a very high back and I would not otherwise be able to see her in our car. I like it because as it is forward it still reclines back a bit, just enough for her head control. Plus the added benefit is I can see her very clearly in my mirror or by turning just a bit to look at her. The other great find we got for her is a Step and Play Piano. She loves this and it has been great for her head/trunk control. She sits in the seat, (it looks like a walker) and on the bottom where her feet hang are piano keys for her to play. There are also piano keys on top for her hands and many little toys for her to play with. Azaria hasn't really started grabbing anything yet but she sure does play a lot of music with her feet. And she loves to see the keyboard light up and hear the music she is playing. I am so glad we got this for her, she can sit in it all day if we let her but we limit her to 20 minute sessions. She even gets upset when we take her out. She definitely is Miss Independent. When she is being held she really likes to push herself forward so that she is not leaning on you, she likes to be held out, showing she can do it by herself. She really is a fighter and definitely my little hero.
I want to close by thanking everyone for their support and love over this past year. Family, friends, and the Aicardi Email Group have been so important to us and we couldn't have gotten through this without all of you. The kindness and love that has been shown to us has been more than incredible. I can not say in words how much I appreciate all of you and how grateful I am. I hope you all know what you mean to me and especially to Azaria.
When Azaria was born, we noticed that she would quiver, but we were told that she was probably just cold, not to worry. The next day we were ready to take our newborn home. The doctor came in to discharge us and while examining Azaria, she had a seizure right in front of the doctor! Azaria was transported to Valley Children’s Hospital NICU. She was given Phenobarbital and had a lot of tests done. A CT Scan showed Agenesis of the Corpus Collosum. We were told this meant she is missing the part of the brain that connects the left and right. We couldn’t believe this was happening to us.
A neurologist suggested an eye exam by a Pediatric Ophthalmologist. We were told Aicardi Syndrome was a possibility, but is very rare and they wanted to rule it out. Before Azaria’s eye appointment we were able to go home and look up Aicardi Syndrome on the internet. After doing some research we couldn’t believe that our baby would be diagnosed with it. The agenesis of the corpus collosum we could handle, but the Aicardi Syndrome, no way! However, on November 5, 2002, at ten days old Azaria was diagnosed with Aicardi Syndrome. It felt like being kicked in the stomach. We were sent home with our baby and a referral to a genetic doctor. On November 12 we saw the genetic doctor and everything was confirmed. We were told that the prognosis was grim. The doctor said Azaria would probably never walk, talk, or live past a few years. We were told to take our baby home and enjoy the time we have with her. We cried and cried.
After being home with our baby, all we could do was hope for the best and take it one day at a time. We continued with the Phenobarb and Azaria was doing fine. At 2 months old we noticed she started having these continuous repetitive jerks. Fortunately we had been in contact with other Aicardi parents through an email group and were able to ask them what they thought this was. The response was infantile spasms. We took Azaria to see her pediatric neurologist and sure enough, he diagnosed her with infantile spasms. We were told infantile spasms are a form of seizure and almost impossible to control. At this time Azaria was having 25-50 infantile spasms a day, lasting anywhere from 10-45 minutes each.
Azaria’s neurologist suggested ACTH injections to control the spasms. We had done research, talked with other parents, and then decided we were not comfortable going that route. It was a hard decision to make but we felt the side effects of ACTH outweighed the benefits, especially since ultimately the seizures would probably return. So instead he put her on Topamax, and we increased her Phenobarb. After a month of that and an increase in seizures we were back to see the neuro. By this time she was having 60-80 seizures a day. We asked if we could try Vigabatrin to help control the infantile spasms since the Topamax was not working. Vigabatrin is not federally approved in the US so we had to purchase it from Canada. Azaria started Vigabatrin in January and it worked wonderfully for the first 2-3 weeks. The infantile spasms came back but not with the intensity that they had been. Azaria was having 20-30 a day, lasting 5-30 minutes each.
When Azaria was 4 months old she started having a new kind of seizure that made the infantile spasms look like a piece of cake. She was admitted to the hospital twice for severe seizures, convulsions, or grand mals. We added another drug Zonegran in hopes to control ALL the seizures she was having. We saw a Pediatric Neurologist at UCLA and she suggested also adding Vitamin B6. We started her on B6, and about the same time Debi removed all dairy products from her diet since she wad breastfeeding Azaria and it was felt the dairy products may be causing some of the seizures. After all of these changes Azaria’s seizures went down and seemed to be in control, only having one or two a day!
Azaria continued to do well. She was weaned off Phenobarbital and Vigabatrin, and stayed on Vitamin B6 and Zonegran. The seizures came back, on and off. She would do great for a few weeks, and then the next week she would need emergency seizure control for status seizures. It was a roller coaster! We tried to figure out why she would do well one week, and then have severe seizures the next. In July we took Azaria to see Dr. David Simon, a Professor of Neurology at Deepak Chopra’s Center for Integrated Medicine in Carlsbad, CA. Dr. Simon gave us a more holistic approach with some wonderful suggestions on how to try and control the seizures. He suggested daily massage, herbal supplements and other lifestyle changes. At the end of our visit, his assistant came in and whispered a mantra in Azaria’s ear. I don’t know what was said but after we left there, Azaria was the best she had ever been!!
Azaria lost her smile when was 2 months old, when the infantile spasms started. When she was 8 months old she started smiling again! It was so depressing not being able to see our baby smile. We are so excited now and appreciate every smile she gives us. Now Azaria is 11 months old and is still only on Vitamin B6 and Zonegran. She still has days were her seizures are out of control, but most days she only has one or two mild seizures, lasting no longer than 5 minutes. Azaria is developmentally delayed for an 11 month old. She can not sit up on her own and she has no interest in toys. She can not grasp any objects, anything put in her hand she will drop. Azaria does not put weight on her legs, roll over or crawl. In August Azaria really progressed with her head control and now has about 90% control! She also learned to do raspberries, and blow kisses. Her progress has been so amazing.
Azaria is legally blind, however she can see us coming from across a room, so we know she is able to see. On September 16th Azaria saw her pediatric ophthalmologist. We were told that the vision in her right eye is very bad. The lesions have taken over most of her vision in that eye. The vision in her left eye is great though. We were given a prescription for glasses so Azaria will soon have cute little baby glasses! Lately, teething has been our big issue. (I have to admit it has been nice dealing with an issue that all parents have to deal with.) Azaria has gotten her two bottom teeth and is now getting her top teeth. She has been very fussy and cranky, she has also had a few more seizures brought on by the teething.
Azaria has regular physical therapy and occupational therapy at UCP, and also at Cypress Rehab. She regularly sees a pediatrician, a pediatric neurologist at Children’s Hospital and UCLA, an endocrinologist at Stanford, a pediatric ophthalmologist, and a pediatric orthopedic doctor. She has a wonderful Vision Specialist who comes to our home for vision therapy. As well as a great physical therapist and a nurse who both come to our home regularly. She also gets Cranial Sacral Therapy, Aqua Therapy, Music Therapy (Kindermusik), and sees a Traditional Chinese Medical Doctor and a Nutritionist. We work with Azaria everyday and we hope one day she will be seizure free, and learn to walk and talk. We would settle for her just smiling everyday and being happy though. Azaria has so many people who love and pray for her. We are all truly blessed having this little angel in our lives! Please feel free to email us using the link below, we love sharing our story. And we are so thankful to have such a wonderful support group with the other Aicardi parents.
For more about Azaria please visit:
www.AzariaSage.org
October 25, 2003
Today we celebrated Azaria's first birthday (her actual birthday is tomorrow). I would like to invite all of you to wish her a Happy Birthday by signing the guestbook at her website, www.AzariaSage.org. I print all of the entries and save them in a memory book so please stop by and wish her a Happy First Birthday. Azaria had a wonderful party today. She was surrounded by many family and friends who love her dearly. We had a magic show that she didn't understand but gave the two guys her full attention anyway. We placed a small birthday cake on her Kid Kart tray and sang Happy Birthday to her. After I blew out the candle I stuck her hands in the cake and gave her a taste of it. She did make a mess of it and seemed to enjoy getting her hands deep inside the cake. I couldn't help remember how my son Christopher on his first birthday was able to stand, almost walk, grab at the cake, eat his cake, drink from a cup and do so many more things. For a moment I was saddened but then I looked at Azaria and saw that she was so content. She gave me a small crinkle of the nose and a half smile with cake all over her face and hands, and I was happy once again. I have learned to not focus on the things she can't do and only think of what she will do. But it has taken a year for me to learn this and some days it is harder than others. This past year has been such a difficult one. Since she was diagnosed right after she was born I have felt like we have been swept up in a tornado this whole time. As many of you know we were told she may not see her first birthday. The more she proves the doctors wrong, the stronger we get and it becomes easier to breathe. The past year has gone by so fast with so many doctor appointments, therapies, hospitalizations, they all seem a blur. I can't help but feel cheated that a year has gone by so fast and we were too busy to actually enjoy it. Time flies even when you're not having fun. Today we reflected on the past year, looking at pictures of the day Azaria was born. I saw how happy we were not knowing what was to come the very next day. I cried because we looked so happy and innocent. Now today we took more pictures and I had to remember that although I don't know what is to come, I have to live in the moment and enjoy today.
Azaria has been doing very well. I have been really working with her feedings. She is still having a lot of difficulty learning to eat from a spoon. This past week I was determined to make some progress in this area and we did. I stopped all other therapies and only concentrated on feedings. After several days of trying she finally started getting it. She still needs some work but with a lot of patience and jars of baby food she will get there. Azaria recently visited with her orthopedic doctor where we received good news. He said her spine looks great with only a very slight curve. No major changes since January. He also took a look at her hips and said they are doing great as well. I asked him if I should be concerned that she is not weight bearing and he said not to worry at this point, that since she is a little behind developmentally that she would catch up in her own time and there is no sense pushing it. He felt she should continue her aqua therapy and follow up again soon. Sounds good to us! I was so hoping that he wouldn't give us bad news. I was afraid he might want to brace her right leg since it is starting to turn out. She likes to keep her legs frog-legged and so her foot and leg are starting to turn out. He said just to keep the massages up, try to keep her legs as straight as possible and to put high top sneakers on her. As for Azaria's seizures, she is still doing well. It's strange, she has 4 to 5 great days with minimal activity-1 or 2 seizures, then BOOM, she has one day that is so terrible and she has the real hard seizures and we have to give her a Diastat (rectal emergency seizure control). We don't know what sets it off or why it happens. I just know I don't want to add or increase any meds at this point. Azaria is only on one medication, Zonegran and also takes Vitamin B6. She has done very well with this and I have to believe these days of hard seizures are just growth spurts or development changes and will pass. I just feel so blessed (knocking on wood) that Azaria hasn't been sick at all this past year other than minor constipation. She hasn't had a cold, flu, stomach bug, ear infection, or even a runny nose. She has been very healthy in that respect and we feel very lucky.
The Spaghetti Dinner and Raffle fundraiser we had was on October 10th. It was such a success! We could not have predicted that it would go so well. The local news stations, ABC and NBC came over to our house and interviewed Azaria. They were so taken by her. They ran the story on the 5 and 6 o'clock news, and then again in the morning. They covered the fundraiser, our family and Aicardi Syndrome. One reporter kept having so much trouble saying Azaria, I kept telling her it sounds like the word "area" but she must have gotten Aicardi and Azaria mixed up somehow. Plus she said TJ was PJ! We were very thankful that they took the time to come to our home and to the fundraiser. The fundraiser sold out and we were over capacity. Many people came without reservations and we added tables to accommodate them. The place was decorated so nicely with a fall theme, lots of candles and pumpkins. We had waiters who volunteered to serve the dinner, starting off with a beautiful tossed salad. The entertainment was perfect. We had a lovely couple sing ballads as people came in, then a solo guitarist entertained during dinner, and finally during dessert a young musician sang and played guitar. It was an amazing evening! We ran out of spaghetti at one point but the cooks were able to quickly make another batch before anyone noticed. We were so lucky to have just about everything donated and so our expenses were very low. Our community was so wonderful in helping us raise over $6,000 for Azaria's medical expenses. So many people who we didn't even know came and most importantly they gave us their love and prayers. We have many people on board already wanting to help us with the next fundraiser which will benefit the Aicardi Syndrome Groups and again also help with Azaria's expenses. We truly feel blessed for all the love and support we have received on Azaria's behalf!
Azaria recently got a much needed new car seat. We are so thrilled to have her out of the infant carrier that gave her little support. Those long trips to UCLA and Stanford have really taken a toll on her little body as she sat in that uncomfortable carrier for hours. We got her the Cosco Alpha and Omega at Target. This has to be one of the best things we could have done for her! She now sits proudly like a big girl, you can just see the pride in her face as she sits tall! She loves it. Even though she is only 17 pounds, I do have her facing forward. This car seat has a very high back and I would not otherwise be able to see her in our car. I like it because as it is forward it still reclines back a bit, just enough for her head control. Plus the added benefit is I can see her very clearly in my mirror or by turning just a bit to look at her. The other great find we got for her is a Step and Play Piano. She loves this and it has been great for her head/trunk control. She sits in the seat, (it looks like a walker) and on the bottom where her feet hang are piano keys for her to play. There are also piano keys on top for her hands and many little toys for her to play with. Azaria hasn't really started grabbing anything yet but she sure does play a lot of music with her feet. And she loves to see the keyboard light up and hear the music she is playing. I am so glad we got this for her, she can sit in it all day if we let her but we limit her to 20 minute sessions. She even gets upset when we take her out. She definitely is Miss Independent. When she is being held she really likes to push herself forward so that she is not leaning on you, she likes to be held out, showing she can do it by herself. She really is a fighter and definitely my little hero.
I want to close by thanking everyone for their support and love over this past year. Family, friends, and the Aicardi Email Group have been so important to us and we couldn't have gotten through this without all of you. The kindness and love that has been shown to us has been more than incredible. I can not say in words how much I appreciate all of you and how grateful I am. I hope you all know what you mean to me and especially to Azaria.
09-22-2008
